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Crying, Need Help ASAP

So scared I’m having Nightmares! On 10/19 & 20th in 2010 I had a double 80-degree curve (1 was a little bigger than the other) straightened down to 15 and 20 degrees (bones did not want to budge) with 38 screws, 16 fusions, many laminectomies, Harrington rods, & 2 cross links holding rods. This was from T4 down to S1. Surgery was with a good talking Dr. who I originally saw for a pain pump, but he talked me into this huge surgery saying he could fix my falling down, pain, and hump instead! This doctor no longer is allowed to practice in CA.

I almost died 4x with infection (wound vac for a month sucking it out) and I am still on antibiotics. My rods are now bent to about 50 degree+ curving out my back so that some of the hardware pushes the skin out into “bumps”, partly due to loose screws. I had to stop using the hard shell brace as it bled where each screw pressed out. X-rays and a CT locally were sent to UCSF (SAN FRAN) a DR. HU (anyone here of her?). She told me she will have to take all the hardware out and put new in plus add 2 more levels to Thoracic, plus a bolt (because one hole is too big for a screw) in front (through hysterectomy scar into Sacrum). I have up to 10 loose screws, 4 on top could hit a disc soon. I was also told the CT shows a couple of screws were changed during the initial surgery. I don’t know how that could be seen on the films. I may still, after 15 months, have the infection, although I’m on antibiotics as precaution, but she will have it checked out.

UCSF is over 8 hrs. from me & I don’t know if we can make the drive. We’re also loosing our home; had to pay for caregivers & my husband has no place to stay in San Francisco plus he needs a couple of surgeries himself, so he won’t be able to care for me this time as he did after the first surgery. 1st surgery was a horror and the people we got to help were pretty expensive and lazy. I fell several times thinking I could walk. I have no idea what we are going to do this time since we don’t even know if we’ll have a home. There also is no family either. We were debating on possibly moving to another state like Florida before surgery to get established in a small condo. If we go up to UCSF now our house may be sold to foreclosure before we could get back in a few months (operation plus rehab facility until I can travel), husband renting a room or something.

QUESTION: We were considering a move to FL but know of any great doctors for revision surgery even after searching this forum. Also I heard FL does not give out pain meds. Is this true? Many doctors told me that I have to be on pain meds the rest of my life. I am currently on, Opana long term & Hydromorphone HCL, or Oxymorphone HCL as breakthrough daily, Xanax or valium, and liquid morphine by mouth at night along with a sleeping pill if needed. I also found out that I now might have Rheumatoid Arthritis. I need suggestions; can people write directly to me? I hope everyone gets better.
ALSO: What questions should I ask the doctor for a revision surgery?

I don't even know where to begin, as it really sounds like you are in a bad position. Are you and husband on disability or have medicare or some other reliable insurance that will go with you wherever you go? I can't believe that all doctors in Florida do not prescribe pain meds. I've heard of at least one or two very good doctors there. I would suggest finding an SRS doctor in the state where you would like to move.

It also sounds like you have very good grounds for a very large lawsuit. That may help with your financial woes. It might not save your current house, but it may get you into a new one when you move.

You had very large curves that did sound like it was surgically necessary, but I'm not a doctor. I saw a doctor that wanted to put a pain pump in my spine as well, but I'd never heard of that for scoliosis pain. He also told me I would be on narcotics the rest of my life. He moved and now I need to find a new anesthesiologist/pain specialist. I have not had surgery, but from what I've learned here, Harrington rods are very seldom used anymore. So that makes me wonder why he used them. The fact that your "fusion" is not holding, tells me, in my unprofessional opinion, that you are not fused and were depending solely on the rods to hold you up.

As far as I know, the best places to have surgery are CA, NY, Twin Cities Spine Center in Minneapolis, MN, and Dr. Lenke in St. Louis, Missouri. Linda Racine, the forum moderator, works with a group of spine surgeons in California. I hope she sees your post and can direct you as it sounds like you need help ASAP!

I hope that I have been helpful in some small way and I wish you the very best. I'm so sorry you've had to go through this.

I work for Dr. Hu, and have also had her as a surgeon on my own long fusion surgery. She's definitely an excellent surgeon. If you want to stay closer to home, I would recommend Dr. Sam Bederman at UC Irvine or Dr. Michael Daubs, who will start at UCLA in March.

Regards,
Linda

Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

I am so sorry you are going through all of this! I can't answer most of your questions, but I will just say that it seems like people usually get home faster than a few months. More like a couple of weeks--even with revision surgeries. I hope that can work out for you and will help with the house situation. Your doctor/hospital should set you up with a walker and other equipment to help avoid falls after the revision. Best wishes for a successful revision!

This is so incredibly sad. I am very sorry for all that you are going through. I can't really give any help other than to say Linda's suggestion makes a lot of sense and all of those doctors have been mentioned here many times as being very good. I hope you can get some relief and assistance for your back. Best wishes. Janet

Janet

61 years old--57 for surgery

Diagnosed in 1965 at age of 13--no brace
Thoracic Curve: 96 degrees to 35 degrees
Lumbar Curve: 63 degrees to 5 degrees
Surgery with Dr. Lenke in St. Louis--March 30, 2009
T-2 to Pelvis, and hopefully all posterior procedure.

Crying, Need Help ASAP

Thanks Melissa for Dr Bederman. 2 hrs! 3 options so I recorded it. I know I said I'm going to have 1 thread and stopping rest. Hopefully by MON. Will have what Dr. B said on that thread. Suggestions on what to name it so there will be no others? 3 options from nothing til 70 yrs old to breaking entire spine. Thanks all Reneetina

Crying, Need Help ASAP

By Mon will let everyone know what Dr Bederman said yesterday. I recorded now will listen & write. If you can give me until MON I will have a new 1 thread (suggestions for good name?) email private if so.Talked about from easy to 3 separate operations! Excuse any errors I may have as I'm not a good typist. Thanks Reneetina

Crying need help asap is closed!

HI ALL: Please use AFter Extensive Surgery until I get my Brand New 1x thread started. My arthritis has hindered me in finishing it in time. But at least there will be only 1 now. saw Dr Bederman & will tell you all about it. Very confused he gave me 3 options from good to very scary.Reneetina

What now?

How is everything now? Have you decided what you will do? I'm sorry for all the suffering you have endured and continue to endure. My son has surgery scheduled with Dr. Nathan Lebwohl in Miami June 14th. It is scary. Let us know how you are. ;o)